Some thoughts and information by Marcia McGinnis based on 23 years of experience with this type of issue.

Difficult Decisions...

Each couple must decide what is best for them. There have been decisions made on all sides of the issue. A parent should ask many questions as to what the various procedures mean to their child and to them.

Delivery, seeing and holding the baby

Many parents make the decision to deliver, either immediately after finding out the problem..no matter at what stage, or going full term. They then move through the labor(or C-section). Sometimes the baby is born alive...others s/he dies during or shortly after the birth. Hopefully, in a supportive, loving environment, the parents are encouraged, but not forced, to name, hold, perhaps dress their special child...no matter how small their baby is.

Often supportive family and/or friends can be part of these memories. I have been part of this kind of experience and have found it very special and most of today's hospitals provide support. This support includes the above plus pictures and any momentos that can be had(pictures with family, stuffed animals or belongings, locks of hair, hand/foot prints, baptism, memorial service, etc). The memories are carried forever and are very special. They know that they have given this child all that they could...with much love.

Eve and Tom..SHARE Atlanta

"My husband and I found out that our baby had anencephaly, a birth defect incompatible with life. I was put in touch with a leader of the SHARE group which was invaluable to us. She gave us literature on grieving. She encouraged us to see and hold our baby and to take pictures of him and to name him. Her emotional support was very important for us."

Atlanta Hospice...Perinatal and Newborn Hospice Support now available...

Today, with options such as Atlanta Hospice offers, a terminally ill baby can be loved either at home or in the safe haven of the hospice environment. This is a viable and important option for grieving parents. With support, they can continue to parent their child with loving arms around them. SA is touched that we are a part of this very special organization. Please contact either the local group or go to the natiional page to find a hospice near you that can help you during this time. They are helping the Pregnancy and Newborn community by validating the significance of our wee babies. Yes, we can love them and care for them even when their life expectancy is brief.

Delivery, deciding not to see or hold the baby

Others have been encouraged, for various reasons, to have the baby surgically removed and never actually see their child. Or some parents choose not to see their baby no matter how they deliver. Their decisions should be respected.

These parents should be given the opportunity to keep as many mementoes, sonogram pictures, mom's hospital bracelet, etc. as possible. We, at SHARE, encourage these parents to make memories as they move along their path(..naming, special keepsakes in memory of...etc.). Because of their love for their baby and their pain of losing their child, they will move through the process of grief...options of support should be offered to them.

Protecting the parents...

Why should parents be encouraged to bond with their child...have as many opportunities of various choices as possible? Because, no matter how their baby is brought into this world, this child was to be part of their future, was already a part of their past together and part of their dreams. They loved this child-to-be and will grieve him or her no matter how they choose to deliver. There will be sadness, grief and healing.

After 23 years as a group leader, and a survivor of three losses(two miscarriages and a newborn death), I know there is a deep desire to protect the couple who must go through this. We can love them, support them, and provide options and considerations for them, but they will have to make the decisions and move through the grieving process in order to heal. They deserve much care, comfort and support as they move through this extremely difficult time.

Initial Reactions...if at all possible - allow time to process and "regroup"

An additional point, while in some cases time is limited for a decision to be made...parents need to be given as much time to consider their options as can be allowed. They may wish to seek another expert opinion...this is a normal and wise choice.

Often the first intense feelings(of shock and denial), that may close parents minds for considering options, gradually, upon a fuller understanding of options, give way to a broader acceptance of possible choices. I have seen this over and over with parents-to-be. The sites listed on this site, my thoughts, and their immediate caregivers may provide them with more ideas for questions and help them formulate their final decision. Marcia McGinnis - written 2002 revised 12.07

See Drop Down Box "The First 24 Hours After Loss" for more information.

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